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Starting Nerlynx in May, 2019

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  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited March 2020
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    I was cowed by the fact that I am on a trial, but I’m over that now. I told them the only way I would resume would be with the dose escalation plan. I have also learned that trial nurses are bean counters, but I can count on my onc and her NP to really look at me. From now on, I will email them myself and not simply let the trial nurse relay things or make decisions. So after a week's break, I re-started on three pills per day instead of six, but with the same amount of Imodium. That should work, right? Wrong! The first night, I was vomiting a lot, and I could not keep a zofran pill down. DH called the cancer center’s urgent care, then went to a 24-hour pharmacy for dissolvable zofran and scopolamine patch. Still had bad diarrhea. It’s like the imodium doesn’t touch it. So when I saw my onc, she was pretty concerned about how much weight I had lost. I got more IV fluids, a few days off, and a prescription for budesonide, which is an anti inflammatory (steroid) for the gut. I will see my NP before I start again, and get more fluids if necessary.

    Thank you for the success stories. I have not given up yet. This could be a good drug for me if I can get to that phase where my body has adjusted to it.

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited March 2020
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    I hear great things about that steroid and helping with diarrhea. It was the reason my MO decided to have me try the drug. Prior to it, she said she would not put any more patients in Neratinib.

    I hope it helps you.

    Hig

  • frmthahart
    frmthahart Member Posts: 59
    edited March 2020
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    Congrats Homemade!!

  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited March 2020
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    Shetland, thank you for updating us--I've been thinking of you and concerned (apparently with reason!). I also hear great things about Budesonide and another drug called Colestipol. Some women are on both and say that for them it made the difference between staying on the drug and not continuing. If my memory is correct, either HomemadeSalsa or LaughingGull was on both, with success. With your situation, I'd ask about Colestipol also, because you need to get to eating again, dear pony. I'm relieved to hear your MO is paying attention to you on this. I keep reading of even three pills getting women to NED in the brain. In just a few months, leftfootforward has seen progress.

    Speaking of leftfootforward (and PJ), you are both in Seattle as I remember we discussed earlier. My sister lives there and says it's crazy with the Coronavirus. I saw my MO last week and my white blood counts are low. I wished I'd asked whether it was the Nerlynx. I finished TCHP 14 months ago, so I'm thinking it must be the Nerlynx. I'm hoping the low WBC is just me and not all of us, but keep washing those hands.

  • laughinggull
    laughinggull Member Posts: 517
    edited March 2020
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    Hi ladies,

    Checking in too. Today I received what I believe will be my last bottle of Nerlynx, since it is a 30 day dose and I started last year at the beginning of April. I have absolutely no side effects now. Eat salad every day. Beesy, I never had Colestipol or Budesonide -only Immodium.

    Take care, everybody. Shetlandpony, good luck with the incremental approach!

    LaughingGull

  • PJ_Seattle
    PJ_Seattle Member Posts: 34
    edited March 2020
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    Homemade - Congrats! That is awesome. I'm about a month behind you, I start month 11 this weekend. I've been able to add in more vegetables since I started the cholestipol, although still take an Imodium if I have a big salad. The fatigue is still the hardest part for me, although I've been having brain fog, feels almost like chemo brain. But, that just might be stress. I'm counting the days, and looking forward to lots of cherries this summer! 🍒🍒🍒

    Caiti - Lucky you! Some people have little to no issues, hopefully that will be you. Good luck with it.

  • caiti2067
    caiti2067 Member Posts: 10
    edited March 2020
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    Thanks, PJ Seattle, deep down I am just waiting for the other shoe to drop, for SE to hit me like a ton of bricks. But maybe I'll get 'lucky' and continue to tolerate this fairly well and just be tired. Hapa's story gives me hope. My oncologist said of 3 people he's given it to so far only 1 has finished the year. I don't know if it makes a difference but I didn't go through as much difficult treatment as many of you. No Perjeta or AC, maybe that helps too. I've been caretaking for my mom over the last 8 months as she's gotten treatment for a local recurrence of triple negative metaplastic at age 72. AC + T, Neulasta, radiation, I've seen how much she suffered compared to my chemo lite experience. Also in the midst of my mom and I getting treatment, dealt with my son needing spinal surgery over the winter break, so I'm getting conditioned to bad news and expecting the worst. I should be more optimistic.

    ShetlandPony, I am so sorry that your side effects have so rough, I hope things get better and that adjustment happens soon and/or the right meds to smooth things out. I've been looking into Budesonide for my mom's colitis too, it does sound promising.

  • PJ_Seattle
    PJ_Seattle Member Posts: 34
    edited March 2020
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    Beesy - Yes, strange being in Seattle. I am a bit paranoid, but also have no idea how worried I should be. My white blood counts have been below normal for most of my 2.5 years in treatment, but also the entire time I've been on Nerlynx. Fortunately, I am able to work from home. This week it was suggested by my team leader at work that I do that for the time being, and I was relieved to have the decision made for me.

    LG - Congrats! I'm so glad you have been doing so well on it.

    Shetland- Thanks for the update. I hope that your team can come up with the drug combo that works for your side effects. It will be much better not having to go through the trial nurse!

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited March 2020
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    Thank you all for sticking with me through this. I have a good report today. Budesonide appears to be the game changer for me! After my second break from Nerlynx, I restarted yesterday, again at 120 mg (3 pills), but with budesonide instead of imodium, and I have had no diarrhea. None! I did have nausea and vomiting in spite of taking zofran about 2.5 hours after neratinib. So I added the scopolamine patch and it settled down. Today I have been able to eat and drink. I have been grazing all day. This is huge, because the weight loss and dehydration were alarming. I still have the patch on and will take the zofran sooner, hoping that will keep nausea and vomiting at bay. It typically starts up about four hours after I take the neratinib.

    Congratulations to those of you finishing up your course of Nerlynx! My onc has another stage iv Her2 mutated ILC patient who got a year and a half of NED on this drug, so my hope is to get at least that. Let’s do it, LFF!

  • hapa
    hapa Member Posts: 613
    edited March 2020
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    Good luck Shetland! I'm glad to hear you're doing better! You sound much more chipper today, hope things continue to be tolerable and you get over the hump sooner rather than later. Take care of yourself.

    I started end of May and I somehow have five bottles left. I feel like I got stuck with an extra month in there somewhere. I know I took three weeks off, but even so.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited March 2020
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    Today my labs showed both tumor markers have fallen to very low numbers! My onc is almost giddy. I’m so relieved! Just a few days ago I went from three pills to four. I think I’ll hang out at four as long as possible. My regimen is budesonide, neratinib, zofran. Imodium as needed; I take one dose maybe twice a week. I’ll be taking the zofran from 8mg to 4 mg, then probably dropping it. I’ve already dropped the scopolamine patch. I’m glad I gave this drug a third try under my terms. It appears to be working.

    Beesy, I am eating again. I have gained a whole pound. I hope you are hunkered down at home. Hapa and Laughing Gull, are you finished with neratinib at the one-year mark? Caiti, how difficult for you to be the sandwich generation and all three of you with serious medical stuff happening. Here’s hoping for a turn to good news for you. PJ, good you can work from home. LFF, I have to catch up but I think you posted not great results. I will look for you...

  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited March 2020
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    Shetland, YAY! Thank you for taking the time to post and update us, and so happy to hear you've gained a pound! After your very rough start, it's great to hear you're seeing results! I've read many times that Nerlynx seems to work quickly. I realize I'm in a different situation, but my MO told me to stay at four, being more pony-sized, and I'm finally not arguing because I'm definitely not a poster-child for handling Nerlynx and apparently never will be. I remember homemadesalsa saying her MO kept her on four because of her size also. And FWIW, I've read of other MBC patients staying on lower doses with success.

    leftfootforward, how are you doing? I remember reading somewhere your hubby is an ER doc. I have a good friend who's an ER doc in NC and she reports it's unlike anything she's ever seen. How will it work with your trial if you cannot travel to SF? Surely they are working with you and your MO!

    Caiti, I hope the other shoe hasn't dropped and you're still doing well--and hopefully less tired now. To the rest of you, hope you are all well during this crazy time.

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited March 2020
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    I am no longer in the trial. The drug did not work for me.

    Trying to stay positive but having a hard time. I will be doing more radiation treatment to my brain once I get insurance approval. But I can only do that for so long so am in a pretty dark place. Add that to the stress of my Husband working on the front lines of this virus and all our exposure and I am really hoping for a break soon. It’s a lot to deal with.

    So if you all can hold out hope for me it would be greatly appreciated. My neck down is stable so that is something. My liver is behaving. I’m trying to focus on that.


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited March 2020
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    Oh, leftfoot, I’m so sorry to hear the trial did not work for you. Agree liver behaving is very good, but man, you need something hopeful for brain. Radiation could buy you time to find it. You and your family totally deserve a break. Your husband is a hero, your family is making a sacrifice sending him to work, like in war time. That probably does not make you feel any better, though. Sending love and hope to you.

  • hapa
    hapa Member Posts: 613
    edited March 2020
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    Shetland - so glad to hear you're doing well with this, and that it seems to be working! After about 5-6 months I pretty much quit having SEs altogether. I will admit that every time my tummy rumbles I wonder if it's the Nerlynx, but my stomach has always been bit touchy and I have never reliably produced 4s on the bristol stool scale so I can't blame the meds.

    LFF - I'm sorry this didn't work for you. That sucks. I hope the rads goes well if that's what you wind up doing.

    I'm not sure if I finish in May or in July. I started in May of last year, but it seems like my script will run out in July. I see my MO (tenatively, assuming this pandemic is contained) in May so I will ask then. I am relatively neutral on whether I just stop in May or finish out my script, so I'll go with whatever he says.

  • elderberry
    elderberry Member Posts: 1,067
    edited March 2020
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    LFF: please thank your husband for his incredible courage. Washington took the first big blow and it is terrifying to see this monster invade the other cities as well. I hope you'll get treatments that work.

    Shetlandpony: Yay on improvements. Maybe we'll see you back on the NEAD board!!

    The streets in my neighbourhood are eerily silent. It is like early Christmas morning. Just so still. For the few shops open as essential service I make sure I thank them and wish health for their loved ones. Being retired and essentially an introvert I don't mind staying home but I loved my daily walk and shop in the neighbourhood. I bought just what I needed, now I have to plan ahead like I did when I worked. There are worst things. I don't see my MO until this horror is over or under control, unless I am really sick. I am not. But I miss our monthly chat. He does answer e-mails. He did that even before COVID-19. I have to go into the infusion centre through another entrance than the one I used. It is blocked off to prevent visitors and such coming in. There are no visitors allowed in the hospital where the infusion centre is. I feel sorry for those who had friends or relatives sit with them during treatment. That is gone. I enjoy working my way through books while stuck in the chair. I don't mind being alone. My husband will be at home waiting for me.


  • PJ_Seattle
    PJ_Seattle Member Posts: 34
    edited March 2020
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    LFF- I am so sorry to hear your news. I am holding you, and your husband, in my thoughts. Seattle has been hit so hard by this, and our loved ones in health care are heroes. If you need some local support, please reach out, I am here.

    Shetland- Thanks for the update. I'm glad you are seeing results, and more importantly feeling better!

    I'm almost to month 12, start this week. Last dose May 6th!

  • Homemadesalsa
    Homemadesalsa Member Posts: 138
    edited April 2020
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    Hey ladies how's it going out there? I just popped in for a final update.

    I was able to get my knee replacement surgery a week early on April 6, so am now recovering and rehabbing during quarantine, which feels perfect. My MO didn't want me on the Nerlynx for the surgery and recovery (enough stresses on the body already) so I quit with 11 good months in the can. It just got easier and easier, honestly, I took 4 a day since mid-May, had some issues up til about July then just ate the little pills.

    Hope your springs are going uneventfully. Crazy times we live in; I don't think we will ever get back to the old normal.

    take care, Salsa

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited April 2020
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    Salsa, I’m glad it worked out for you to get our knee replacement, and 11 months is a respectable time.

    My PET scan confirms lesions smaller and even more importantly, no activity in the liver. So it seems I have reached NEAD for a third time. I take the budesonide about an hour before I take the neratinib. I had to start taking more imodium because even though the diarrhea has improved, it has been enough to deplete me of potassium. It did not help that I had a week of antibiotics for my stent exchange. I had to get a potassium infusion and was prescribed a supplement. But the supplement had a laxative effect and actually made the diarrhea worse. So with onc’s approval I have stopped the twice daily pill supplement and am using a powdered form that I can take gradually throughout the day, sprinkled in beverages. My onc is concerned that low potassium can cause heart arrhythmias. I am also motivated to get a handle on this because the trial nurse indicated that if the diarrhea and potassium level is bad next visit, they may reduce my neratinib from four pills to three. I do not want that, so I am being very careful. So, great success with neratinib, but needing to carefully manage diarrhea. It has been about ten weeks since I started.

  • morrigan2575
    morrigan2575 Member Posts: 801
    edited April 2020
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    Congrats Shetland Pony!

  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited April 2020
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    Shetland, what wonderful news about Nerlynx getting you to NEAD! We celebrate with you! Thank you for taking the time to update us, as I've been thinking of you and leftfootforward--a bunch. LFF, I hope your situation with your husband working in the ER in a hotspot has calmed down. Did you see that Tucatinib was cleared this week? If Nerlynx did not work for you, LFF, does that rule out Tucatinib also?

    Salsa! CONGRATS on finishing! Glad to hear your knee replacement is behind you--this is a great time to stay home and rehab. Are you anywhere near the big outbreak in Idaho? I read a fascinating article on that--the number of cases was crazy in a tiny little area.

    PJ, you must be getting so close to finishing! If the day ever comes that I would be able to visit my sister in Seattle, I'd love to meet you and LFF for a cup of coffee or lunch.

    After boldly thinking I would be the perfect patient to take Nerlynx (because of a lifetime of tending toward constipation without a supplement like magnesium--sorry for the TMI), I WAS WRONG. I am willfully stubborn enough to continue, but let's just say, my body does not deal with this drug well---I am NO hapa. I am motivated because my tumor was so highly HER2+ and it grew so large so fast right after diagnosis, including invading the nipple. My symptoms are nothing like what Shetland was experiencing in terms of intensity and the subsequent side effects it caused for her, but let's just say that it's up and down, up and down. I can live like this until October.


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited April 2020
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    Beesy, I think we all need to find the right dose and the right diarrhea meds at the right dose. I had to work closely with my doctor, my onc nurse, and trial nurse #2 (the good one) to balance everything properly. I had to quit the 6 pills for a week, then restart with 3, wait two weeks, then move to 4. Also I found that just imodium, even lots of it, was not what I needed. Daily budesonide was a game changer. Also lomotil has been helpful occasionally if I have taken imodium but still have trouble. Keep watch to see how your body responds, and I hope you will figure out the sweet spot soon so there isn't so much up and down.

  • hapa
    hapa Member Posts: 613
    edited April 2020
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    Salsa - congrats on finishing!

    Shetland - wow, that is so great! For you, of course, but also for all the other women who will benefit from this drug in the future. It actually makes me feel better about taking this drug, knowing that you're having such success with it!

    Beesy - I'm sorry you're having so much trouble. I honestly don't know how I've gotten off so easy. I'm scheduled to go to Houston in June, if you're up to meet someone! Of course all appointments are tentative these days.


  • frmthahart
    frmthahart Member Posts: 59
    edited April 2020
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    Salsa, YAY for being DONE!

    Shetland, CONGRATS on NEAD!!! That is wonderful :) May you be so in perpetuity.....

    LFF, thinking of you...!


  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited April 2020
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    thanks everyone. I had radiation treatment #3 today only 2 left. Hoping y to o start tucatinib soon if it gets released and insurance approves it:

    I’m going to follow this thread to see how everyone is doing.

  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited April 2020
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    LFF, Tucatinib is being released by the FDA just in time for you! I know you had trouble getting Nerlynx paid for by insurance, but that was before it was approved for MBC, so surely that won't be a problem this time. Please keep us updated as you can--we are cheering for you! I think about you so very often.

    hapa, I'd love to meet you in June, if your appointments stick! Back before the world turned upside-down, when we could do normal things like meet friends for lunch at a restaurant, I would often suggest Salata because I just love a good salad, but they can be disastrous for me now (I still tempt fate at home but the last time I ate at Salata it was a long ride home). Not sure about Waffle House, either, but we'll figure out that detail when the time comes. 🤪

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited April 2020
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    Leftfootforward, your road is a hard one, and you are amazing the way you keep on. Such good news from Beesy on the new drug. I hope you can get it without a fight. Or at least let your onc fight in the background while you get on with life.

  • PJ_Seattle
    PJ_Seattle Member Posts: 34
    edited April 2020
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    Salsa - Congrats on finishing!

    Shetland - Congrats on getting to NEAD again!

    LFF - I so admire your strength. It does seem that the new drug was approved just when you needed it.

    Beesy - Yes, 12 doses left, including today. I have the days counting down in big red numbers on my calendar. As you all know, I have experienced side effects the entire year, so I am very much looking forward to it. And, if I can make it through my year, so can you! I think getting together when you can make it back to Seattle is a fantastic idea! I would like that very much.

  • BevJen
    BevJen Member Posts: 2,341
    edited April 2020
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    Hi to everyone!

    I am currently on Ibrance/faslodex (since last August) but it seems to be failing me since my TMs are going up. Shetland pony and I have been communicating regarding the SUMMIT basket trial. That will be coming at some point to my treatment site (I gather they are still working out the details) but I am curious how the rest of you are on Nerlynx (neratinib) -- is it through a trial, through compassionate use, or some other way?

    I have the ERBB2 mutation, and so I'm researching about next steps before my May 19th CT scan/visit with my MO.

    Thanks for any info you can provide.


  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited April 2020
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    BevJen,

    Most of us here are early stagers who qualified because of the HER2+ nature of our tumors and it's paid for by our insurance, pretty much no questions asked. As far as I can remember, only ShetlandPony and leftfootforward joined us as part of a trial. All that said, we don't discriminate around here, welcome anyone and would love for you to join us! 😉

    What we can help with is dealing with side effects. Some of us take Nerlynx and have almost no side effects and and others of us can't say the same. As Shetland found out, starting at a lower dose and titrating up helps very much, and there are some prescription medications that can make life much more pleasant, also.

    I am one of the ones who hasn't sailed right through with Nerlynx but I am very motivated to take it because my tumor grew quite large right at diagnosis and was highly HER2+. For us, it's a one year course and even since some of us have started, Puma has made alterations in the administration of the drug, allowing lower dosages, etc. Some of the ladies who started with us decided it was not worth it to them--for some the diarrhea can be intolerable.